On 19 Apr 2000, at 5:25, Judy George wrote:

> murray you are a gem

Judy, you can call me names whenever you like!  Thankyou!  ...  murray

> i had been discussing my fears with my daughter today and one of the issues
> is that one has no idea what each day will bring
> one thinks it will all come like a tidal wave and consume
> your words remind me that it is mostly? progressive and one will have time
> to manage it
> judy
>
> >From: Murray Charters <[log in to unmask]>
> >Reply-To: Parkinson's Information Exchange Network
> ><[log in to unmask]>
> >To: [log in to unmask]
> >Subject: Re: New Member
> >Date: Wed, 19 Apr 2000 01:06:24 -0400
> >
> >On 18 Apr 2000, at 22:27, Kathleen A. Link wrote:
> >
> > > Hello.  My name is Kathy, and I'm 30 years old, and I am in the process
> >of
> > > being diagnosed with Parkinson's Disease.  My neurologist is pretty
> >sure,
> > > but is sending me off to a Parkinson's Specialist next week to confirm.
> > >
> >
> >A Parkinson's Specialist at a Movement Disorder Centre, if at all
> >possible, is the very best way to go when you need a second opinion.
> >
> > >
> > > If I do have Parkinson's, I have had symptoms for the past 9 years
> >without
> > > knowing it.  Thus, when I go to the specialist next week, would like to
> >be
> > > armed with some really intelligent questions and information regarding
> >my
> > > condition in terms of medication, what to do, what not to do etc.
> > >
> >
> >I posted some URL's for Doctor's Visit, Checklists, Questions, the
> >Neurologic Exam etc. a little over a week ago.... They are on Janet's
> >WWWeb Site at:
> >
> >http://www.geocities.com/janet313/pienet/wwweb/index.html
> >
> >Scroll down to: WWWeb Resources 09 - Doctor Visit
> >
> > >
> > > If you were me, what kinds of questions would you be asking?  Do you
> >think
> > > there's any danger of being mis-diagnosed?  Ever hear of anybody who
> >was?
> > >
> >
> >I was misdiagnosed about 3 - 4 years after first symptoms and
> >thought I was early stages of MS but that was later ruled out and
> >I went several more years until symptoms progressed to the point
> >my wife and a dance instructor decided I had Parkinson's.  I went
> >to a neurologist and he took months to confirm.  Then I switched
> >neuros and went to a Parkinson Specialist at a Movement Disorder
> >Centre and he confirmed Parkinson's in minutes.
> >
> > >
> > > This is all new to me, so I am very respectfully picking your brains.
> > >  Thank you, in advance, for any information you can give me.
> > >
> >
> >Yep, it's all new to almost everyone of us on diagnosis. The main
> >thing is to not get overwhelmed by it all and trust me, that can
> >happen...
> >
> >Here is a copy of a letter I posted in Jan. '98.  I'm 2 years older
> >of course but these words still apply.  I've been meaning to dig
> >this puppy out of the archives and dust it off so thank you for
> >your post supplying the impulse....  Here it is.....
> >
> >  Posting number 36244, dated 16 Jan 1998 21:53:33
> >Subject:      Re: Support Groups
> >
> >Hi Virginia;
> >I'm a Parkinsonian who can identify with your letter.  I had symptoms at
> >age 40, was finally diagnosed at age 49 and am 53 now.  I too would like
> >to work until my maximum benefits kick in (at age 60).
> >
> >I would like to offer the following to your friend:
> >
> >I was not pleased with my first neurologist and tried others until I
> >was satisfied.  I wondered how I would cope and one understanding
> >dr. advised me that in fact I had already been coping with all my
> >symptoms for more than a few years.  This single conversation gave
> >me a different perspective and started me managing my Parkinson's
> >myself instead of looking for others to provide all the answers.
> >
> >Parkinson's sneaks in slowly and even though you receive a diagnosis
> >and suddenly "have Parkinson's"  it is just a name to apply to all
> >your symptoms.  Nothing has really changed.  Sure your Parkinson's
> >will eventually progress and of course you will have changes and
> >adaptations to make but it's not like a heart attack or stroke where
> >immediate intervention and changes are essential to life itself.
> >
> >This means you do have some time to consider and manage these
> >changes.  I work in one of the building trades.  I am an elevator /
> >escalator mechanic.  It took a few months for me to decide to tell
> >people or not tell people.  Then I started with all of my family, the
> >union, my employer, friends, neighbors, and so on.  Everyone was
> >supportive.  I still work and I'm relieved that I am not hiding.
> >
> >It is very important to find out everything you can about Parkinson's
> >because you will soon discover we are each unique individuals and since
> >you will only be seeing your neurologist once in a while you will need to
> >become the expert on your own case.  This expertise will allow you to
> >manage your PD.  and make the vital decisions facing you with a level of
> >confidence.
> >
> >I didn't think I needed a support group but was talked into going to
> >the Early Onset Group locally to see what it was like.  I soon
> >realized what a nice bunch of people most Parkinsonians are.  They
> >all had something to offer and I realized I did too.  I learned from
> >their experiences; from education meetings; from volunteering for
> >clinical studies in the Movement Disorder Clinic; from books; the
> >Internet; and now from this "List".
> >
> >My best advice is that keeping busy and keeping a positive attitude
> >is better than all the drugs known to mankind.  Yes, you will need
> >some drugs too.....but be informed enough to decide yourself (in
> >consultation with your professional medical practitioner of course)
> >when to start a regimen of drugs.  Be informed and alert to any drug
> >related positives and negatives and/or side effects so you will be
> >able to consult and have a role in adjusting medication to suit you!
> >
> >Be prepared whenever you meet with your dr.   Make a list of your
> >feelings and your questions and participate actively.  Don't leave
> >until you are satisfied you understand and agree with your
> >treatment.
> >
> >I hope this is of some assistance.
> >
> >If you need to ask.... anything goes on this List and someone of us
> >will surely respond.
> >
> >I wish the best for your friends.      Murray
> >.
> >***************************************************************************
> >
> >That was more than 2 years ago... I still work, more than full time,
> >and I believe more than ever in keeping as busy as possible.
> >
> >Kathy, I wish all the best for you and all the new members ... murray
> >
> >
> >[log in to unmask]
>


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